Hi! My name is Genesis Marieva, but my mommy, brother and family call me SISSY! This is my story battling HLH or Hemophagocytic Lymphohistiocytosis! When I was in my mom’s belly, my mom felt very sick. She knew something was wrong. She changed doctors lots of times and no one could figure out why she was feeling so bad. My mom did genetic testing with Natera, had 3 anatomy scans and was “high risk” and it still didn’t catch my genetic disease. It’s very rare! I have a special type of HLH, that I inherited from both parents, it impacts the RAB27A gene, and causes Griscelli’s Syndrome type 2! There’s 3 types of Griscelli’s, but mine requires a bone marrow transplant because my immune system is weak and attacks my own body.
